Patient/provider notification

DuchenneConnect will partner with study investigators/sponsors to distribute information to participants and providers through the following methods:

  • Targeted subpopulation notification DuchenneConnect will distribute an announcement, with an IRB-approved recruitment notice/advertisement (if available), and a link to the study information on the DuchenneConnect website, to participants identified through the study investigator’s targeted search.
  • General participant notification All participants (regardless of candidacy) will receive email notification from DuchenneConnect that a new study on Duchenne/Becker muscular dystrophy is open, with a link to the study information on the DuchenneConnect website.
  • General provider notification Registered providers will receive notification from DuchenneConnect that a new Duchenne/Becker study is open for patient recruitment, with a link to the study information on the DuchenneConnect website, that providers can identify potential patients for recruitment.
  • Website notification DuchenneConnect will post the announcement of the clinical trial on www.duchenneconnect.org, emphasizing that the study sponsor has partnered with DuchenneConnect to recruit patients using mutually agreed-upon language. The clinical trials section of the DuchenneConnect website will also include a table of all Duchenne/Becker muscular dystrophy studies currently listed on www.clinicaltrials.gov.

Interested participants and providers will be instructed to contact the study recruiter directly. Email and website notices will include language that DuchenneConnect does not endorse specific studies, but provides this information as a service to the community. Participants are encouraged to discuss all study opportunities with their medical care providers.